Life stories and perspectives of leaders in the self-advocacy movement were explored to enhance knowledge about disability identity formation. In-depth qualitative interviews were conducted with 13 leaders in the self-advocacy movement. Five major themes emerged: (a) resistance—claiming personhood and voice; (b) connection with disability community; (c) reclaiming disability and personal transformation; (d) interconnection with broader disability rights movement; and (e) bond with social justice and interdependency.
In recent years scholars in the field of disability studies have begun exploring, debating, and constructing a theoretical framework of disability identity. Longmore (2003) characterized the advancement of positive disability identity and culture as the “second phase” of the disability rights movement. Similar to positive identity formation of other oppressed minority groups (Cass, 1979; Cross, 1971, 1991), connections to community, shared experiences, celebration of values different from the majority culture, and integration of difference into a positive self-concept appear to be key aspects of this process for individuals with disabilities (Gill, 1997).
Autobiographical works by authors and artists with disabilities have opened accessible pathways towards exploration of disability identity (Clare, 1999; Linton, 2006; Mitchell & Snyder, 1995; Murphy, 1987). However, few researchers have built upon this knowledge to expand our conceptual understanding of disability identity and the process of identity formation (Gill, 2001; Gilson, Tusler, & Gill, 1997, Hahn & Belt, 2005; Priestly, Corker, & Watson, 1999). In perhaps the most in-depth exploration to date, Weeber (2004) conducted interviews with 18 leaders from a broad cross-section of the disability community to formulate a working model of disability identity development. The theoretical framework supports a dual-dimensional process consisting of (a) integration of disability positively into one's sense of self and oneself into the disability community and (b) expansion to include an increasing variety of disabilities, other diverse communities struggling for equal rights, and a spiritual sense of oneness with all of humanity.
Some researchers have questioned the conceptual application of disability identity to individuals with intellectual and developmental disabilities, noting that many individuals do not self-identify (Davies & Jenkins, 1997; Finlay & Lyons, 1998) and that parents may shelter individuals from such “toxic labels” (Todd & Shearn, 1997). Others have contradicted (Johansson, 1996; Szivos & Griffiths, 1990) and challenged (Rapley, 2004; Rapley, Kiernan, & Antaki. 1998) the interpretation of these findings. Yet our understanding of disability identity for individuals with intellectual and developmental disabilities is rudimentary at best.
Over the past several decades, the self-advocacy movement has emerged from grassroots organizing of individuals with intellectual and developmental disabilities. Origins generally date back to developments in Sweden during the late 1960s, particularly “social clubs” initiated by Bengt Nirje, which provided opportunities for individuals with intellectual disability to organize and practice self-determination (Dybwad, 1996; Nirje, 1972). Some of the earliest developments within the United States trace back to Oregon in the early 1970s (People First of Washington, 1984; Schaaf & Bersani, 1996). The movement quickly spread throughout the United States and internationally in subsequent decades (Williams & Schoultz, 1982). The first national self-advocacy conference in the United States was held in Estes Park, Colorado, in 1990 (Shoultz & Ward, 1996) and the national organization, Self Advocates Becoming Empowered (SABE), became incorporated in 1994 (Hayden & Nelis, 2002). There are currently over 800 self-advocacy chapters in the United States and chapters in at least 43 other countries (Buchanan & Walmsley, 2006; Hayden & Nelis, 2002).
Leaders within the self-advocacy movement hold valuable knowledge and perspectives, and researchers have explored their life stories. In recent years, there has been a resurgence of life story research (D. Atkinson, 2004; D. Atkinson & Walmsley, 1999; Johnson & Williams, 1999; Meininger, 2006; Mitchell et al., 1996; Traustadottir, 2006). This work builds upon several foundational studies in the field during the deinstitutionalization movement that sought to explore the lives of individuals with disabilities and the social meaning of “mental retardation” (Bogdan & Taylor, 1982; Edgerton, 1967). Although much of this work has remained focused on historical experiences of institutionalization, Goodley's (2000) work with self-advocates in the United Kingdom has led to a better understanding of the fluid nature of self-advocacy as a form of resilience that takes place within relationships inside and outside of self-advocacy groups (Goodley, 2001, 2005). This work has advanced application of the social model (Oliver, 1996) to individuals with intellectual disability, particularly blurring the line between the separation of impairment and disability (Goodley, 1997; Goodley, Armstrong, Sutherland, & Lauries, 2003).
Shakespeare (1996) has argued that the essence of disability identity is found within “stories, having a space to tell them and an audience which will listen” (p. 113). In the current study I build upon previous life story research in providing space for leaders in the self-advocacy movement to contribute to a better understanding of disability identity formation.
Sample and Data Collection
Participants were 13 leaders in the self-advocacy movement. For the purposes of recruitment, I operationalized a leader as an individual who had held an elected office within the movement at the local, state, or national level. Individuals with disabilities from the Council on Community Advocacy (COCA) within the Association of University Centers on Disabilities (AUCD), and the Advocate Advisory Committee of the Rehabilitation Research and Training Center on Aging with Developmental Disabilities assisted me with initial recruitment of participants and design of an interview guide. I also used a snowball or nomination technique, where participants suggest other leaders for potential inclusion in the study. Recruitment and the final sample were ultimately driven by theoretical, or purposeful, sampling in order to establish desired diversity of race/ethnicity, gender, age, and geographic location. Demographics of the 13 leaders are shown in Table 1.
I adopted a life story approach that was focused on leadership development of self-advocates, the meaning of leadership, and the future of the self-advocacy movement. Based on previous research (R. Atkinson, 1998; Goodley, 2000; Kasnitz, 2001), I constructed a draft of a semi-structured interview guide. The final version of the interview guide consisted of 39 questions in 12 domains. Prior to the first interview, I used a pre-interview phone call with participants. At that point a convenient time (block of at least 4 hours) and comfortable location for the interview was determined. Prior to the interview, each participant received a copy of the interview guide. This served a dual purpose. It outlined the major areas to be covered in the interview, which helped relieve anxiety (R. Atkinson, 1998), and served as an accommodation to provide individuals with intellectual and developmental disabilities additional time to process information and prepare for the interview with the assistance of support persons (Caldwell, Hauss, & Stark, 2009).
Five of the interviews took place in the home of the leader; three, at the workplace of the leader; three, at a local library; and two, at the office of a local self-advocacy organization. In addition to receiving the interview guide prior to the interview, participants were also asked bring personal artifacts with them to the interview to assist with communicating their life story. Artifacts included such items as photographs, videos, power point presentations, awards, fictional stories, and other articles written about their life.
Primary interviews ranged in length from approximately 2.5 to 6 hr, with the average interview lasting approximately 3 hr. Although I used the semi-structured interview guide to focus the interview, interviews were approached as “guided conversations” and flowed naturally (Cole & Knowles, 2001). Domains of the interview guide not touched upon were revisited. All interviews were audio- and videorecorded. I conducted all interviews and transcribed them because the speech of many of the participants was difficult to understand. I also recorded notes and observations that were used in data analysis.
Data Analysis and Credibility
Data collection and data analysis in qualitative research is circular and interactive (Miles & Huberman, 1994). Immediately following each interview, I reviewed notes and created memos that captured hunches, emerging themes, and reminders to follow up or pursue additional information in subsequent interviews. As I transcribed audio, I added additional information to memos. I used ATLAS.ti, a qualitative software package, to organize collected data. My approach was grounded theory (Strauss & Corbin, 1990; Taylor & Bogdan, 1998), driven by constant comparative analysis, where I simultaneously coded and analyzed data inductively to construct theory. I reviewed audio from each interview and read transcripts several times. I developed an initial coding scheme focused on disability identity formation within the broader process of leadership development of self-advocates. ATLAS.ti software assisted with development of a higher order coding scheme, allowing for modification, combination, and splitting of codes as new data were added (Strauss & Corbin, 1990).
Multiple perspectives and terminology exist within qualitative research concerning issues of validity (Creswell, 1998; Miles & Huberman, 1994; Patton, 2002). Patton and Creswell suggested using the terminology of credibility and highlighted several concrete strategies to use when designing qualitative research. I adopted several of these strategies in the current study. Interviews took place within a naturalistic setting. Pre-interview discussion occurred to establish rapport and clearly communicate the purpose of the study. The invitation to bring artifacts to the interview provided a source of triangulation. I consulted a colleague in the field of disability studies during data analysis, which assisted in my development of hunches and revision to the coding scheme. I used thick, rich quotes from participants in the presentation of findings.
In addition to these strategies, collaboration with participants in the development of their life stories occurred. I conducted follow-ups with all participants either by phone or in person. Prior to follow-up, all participants were provided a copy of their interview on DVD. Because many of them had limited reading abilities, this provided a way for participants to review and think about their interview. In addition, all participants were provided with a summary of the key themes that emerged. Simple language was used as well as key quotes to illustrate the major themes. Follow up served as a member check of the initial coding scheme of major themes that emerged across interviews with participants.
Five major themes emerged related to the formation of disability identity within the life stories of leaders in the self-advocacy movement: (a) resistance—claiming personhood and voice; (b) connection with disability community; (c) reclaiming disability and personal transformation; (d) interconnection with the broader disability rights movement; and (e) bond with social justice and interdependency.
Resistance—Claiming Personhood and Voice
Leaders in the current study acquired labels of intellectual and developmental disabilities early in life. Some individuals first recalled noticing difference at an early age (e.g., being slower, not being able to read, needing more time to process information, or requiring other accommodations). However, realization of difference was intertwined with negative social experiences, such as segregation and exclusion, that equated difference as something negative. As one leader recalled:
One of the things I did notice before they sent me to the special education class was that I was slower than a lot of the other kids in the class. Usually they were waiting for me to get something done before they went to something else, and that kind of made me feel bad all the time. It made me feel like I didn't know anything. … I knew I was different in some way, but I didn't like thinking about it. The first time I really thought about having a disability I was about nine years old. I was sitting there thinking, “Why am I so different?” Nobody wants me to play ball with them. Nobody wants me to do anything. I am the last one to be picked for anything. I was just really feeling bad that day, I think. I was watching everyone play ball and I couldn't play. (Participant 8)
These types of societal messages devalued difference and caused individuals to “feel bad” about themselves at an early age. Many self-advocates recalled feelings of shame about having a disability. Some individuals attempted to deny or hide their disabilities. For example, even though it was physically painful, one individual with cerebral palsy described how she would remove her leg braces every day at school in hopes of preventing other kids from teasing her.
Virtually every leader in the current study shared experiences of bullying, labeling, and name-calling during their school years. Experiences first occurred for many in grade school but seemed to become more prevalent in middle and high school. When asked to discuss their childhood, many individuals began by recalling these negative experiences. They described their school years as being very difficult, even horrible. One leader reflected that during middle school she really didn't love herself; at points she even thought of killing herself as an escape because she wanted to be accepted by society and not just her family.
The majority of leaders in the current study had accepting, nurturing family environments that, similar to findings by Todd and Shearn (1997), perhaps buffered against some experiences of oppression at a younger age. Several self-advocates shared stories about only truly feeling accepted when around other family members, such as the following:
My family never, ever put me down. My family never, ever made me feel like I was stupid. They just didn't. Other people who I met over the years, who didn't know nothing about disability, made me feel stupid. That is what you never want to feel like. … If you feel like you are stupid, you feel like all you want to do is go into a corner and hide forever. (Participant 11)
In many cases, however, families were also overprotective and at times contributed to experiences of oppression. Moreover, experiences of oppression took place outside the family in various forms across the life course, such as bullying, school segregation, sheltered workshops, employment discrimination, and institutionalization. Forming a positive personal identity, outside of family, was often a struggle. Societal messages about disability, a minority background not shared by other family members, and few connections to a disability community and positive role models with disabilities were factors that posed challenges.
As Rapley (2004) argued, “intellectual disability” and associated labels are contestable, disreputable moral social constructs that function to deny individuals personhood. The labels of intellectual and developmental disabilities are overarching and damaging. As one self-advocate explained:
You know, they mention all different types of disabilities, but if you mention developmental disabilities they quickly assume that people don't have the capacity to understand or know what's happening in their lives, or somebody has to help them, or somebody has to explain it. And that's not the case. Sometimes that kind of thinking gets you riled up. We are always needing to explain to people that people are capable. You know, most other disabilities, people look at people as, “Oh, look what they can do, that's wonderful. Oh.” They sort of get amazed. You say a developmental disability and, “Oh! There's something wrong, or that's dangerous.” (Participant 7)
Within Gill's (1997) conceptualization of disability identity development, the first stage is integration within society. However, due to the stigma associated with particular labels of intellectual and developmental disabilities, an initial step for self-advocates appears to be a much more elemental form of resistance: claiming personhood and finding a voice. As one leader shared, for much of her early life she literally had no voice:
In the meeting, we began People First. I sat in the back of the room and didn't talk. I talked to people who was by me, but I would not talk out loud. No way would I talk out loud! I would say “yes” or “no” to whatever the thing was, but talk out loud? No! I did that for three years. (Participant 11)
Several leaders emphasized the importance of gaining confidence, speaking out, and finding a voice. One leader even drew a parallel between this form of resistance and other acts of civil disobedience and protest more common within the broader disability rights movement. For some individuals this form of resistance starts by just saying their name at a meeting or talking among friends. In fact, one expression of disability culture within the self-advocacy movement is “open mic,” which sometimes occurs at meetings or conferences:
Another thing we do is something called “open mic.” It gives people a chance to get out in front of everybody and say anything they want. And by the time “open mic” happens, people are up there doing anything from saying their name, which may not be a lot to some people but if they have never had the courage to get up and speak before, and they just said the name, that is a huge issue! That gave them the courage to do something on their own! (Participant 1)
The phrase “people first” not only holds historical meaning within the movement but also cultural significance in claiming personhood and finding a voice as a form of resistance within the self-advocacy movement. This appears to be an elemental theme in the formation of a disability identity. Relationships with family, friends, and frequently other key support persons in individuals' lives provide trusting environments to build confidence and foster resistance to oppression.
Connection With Disability Community
Interrelated with resistance, a second central theme in the formation of disability identity was connection to a disability community. The majority of individuals recalled connections with other individuals who had disabilities during school. Many individuals were placed within segregated educational settings, where they formed personal relationships; some experienced congregate work or living arrangements with other individuals with disabilities. As one leader reflected:
Even though people say mainstreaming is good and that they need it, and that they want it for their child … It's good to let the community know who you are, but you have to grow up with it, and have it happen kind of throughout your life. There's a time when you need to learn the things that you need to learn to survive as a person with a disability. (Participant 7)
For some individuals a sense of community formed out of these relationships. Others seemed to maintain a particular relationship with another individual with disabilities that provided a meaningful bond, friendship, and sense of community. However, for most leaders in the current study, immersion into the self-advocacy movement led to a much deeper understanding of the shared experience of disability. As one leader recalled:
There is a shared experience. And people talk about that! They talk about the things that have happened to them. And it is hard to talk about that in front of the stranger who might not understand, or who might think it is stupid, or might say something in the middle of somebody's story. And it is embarrassing at times too for people who get out and share an emotional story. So people have a hard time with that. And the more trust that is in the room, the more people share what they feel, the more secure they feel and sometimes things come out that aren't even related to the topic, like someone who has been abused, things that are happening that are bad. (Participant 1)
Life stories of many self-advocates in the current study were full of periods of loneliness, not having opportunities to form meaningful relationships and friendships during childhood, adolescence, and early adulthood. The self-advocacy movement provided pathways to new relationships. It also provided interdependency, a cultural value of supporting one another, highly valued within the movement. As one leader reflected on her first exposure to the self-advocacy movement:
There was a whole bunch of people who had experiences like me and we supported each other to work though those experiences. That is one of the things that I think is very important about People First. More than likely you are going to have somebody who has had the same experience that you have had. So, they are always going to support you to do whatever it is you want to do. You are never going to do it by yourself. (Participant 3)
Exploring the life stories of leaders in the independent living movement, Kasnitz (2001) identified what many leaders in that movement referred to as an a ha! moment, an epiphany when they realized a connection or bond with others. The a ha! moment for the majority of self-advocates in the current study was their first attendance at a statewide or national conference. Leaders said that experience really “changed their life and perspectives on a lot of things.” As one leader recalled:
That was one of my first national experiences. Just going to that meeting. … Just seeing all these people with disabilities. I guess that was one of the first times I realized that there are a lot of people in this world with disabilities and a lot of us have the same stuff in common. (Participant 8)
Some leaders with international experience also shared stories that highlighted the strong bond between self-advocates from various cultures that transcends language barriers. Individuals also expressed a visceral bond, that they could “feel the pain” of others when they talked about similar experiences, such as being bullied or called the R-word. However, some leaders expressed that this connection is frequently challenged, particularly by parents who believe some self-advocates cannot possibly understand the unique needs and perspectives of their child with disabilities.
Leaders also expressed the importance of developing pathways for youth with disabilities to connect with a disability community. The life story of the youngest leader in the current study is perhaps illustrative. He had been fully mainstreamed in school and really had no connections at all with anyone else with a disability. It was not until later in his education that he was exposed to a disability community. He ultimately expressed an amazing sense of relief upon this connection:
I started connecting. I was thinking, “Whoa! I'm not the only one with disabilities or the only one with challenges.” And it just, as time went on, it was like, it felt amazing, it felt really good to get to know people that were like me in a way and had been through the same kind of challenges as me. So I was thinking that, “Wow! I would like to connect with these people who actually want to be friends with me.” (Participant 13)
Similar to other leaders in the current study, his exposure to a disability community led him on a journey of personal reflection, redefinition, and transformation.
Reclaiming Disability and Personal Transformation
Connections with the self-advocacy movement contributed to a process of personally reclaiming disability from socially constructed labels and categories (Linton, 1998). This appears to be an integral third key element of disability identity formation and leads towards a personal transformation. As illustrated below, one leader explained her limitations and how she integrated these differences within her identity:
Having a disability is very hard. Why it is hard is ‘cause I cannot read. Write very little. I can read some but not a whole bunch. That was hard in my life. People didn't understand why you couldn't read. If you were a grown up, why you can't read? But to have a disability, it was all right. I think to have a disability, it got me where I am today. … That was when I was younger, but today I have to be okay with it. I have to be okay with not reading. I have to be okay with not spelling. (Participant 11)
She was able to identify and define on her own terms what she considers to be limitations, versus a label, and “be okay” with that.
Another leader explained the importance of accepting and embracing difference:
One of the things that is really important to me—for any advocacy organization or person for that matter—I think it is really important that they accept the fact that they have a disability. Because until you accept the fact that you have a disability, you are not going to be able to get the confidence to advocate for yourself, you are always going to see yourself as this “poor disabled person.” For me, it was like a light bulb going on, so to speak, once I figured out that, “Yeah, I do have a disability, but I am still a person.” (Participant 3)
Leaders expressed the importance of understanding limitations in order to know and communicate when you need supports. Connections to the self-advocacy movement fostered integration of difference within their identity, providing self-advocates with a whole new way of defining themselves:
I always used to be afraid to say stuff because I didn't want to sound stupid. So I was always afraid to ask questions. I was always afraid to ask for support. I used to say I am sorry all the time. Before I would ask somebody if they would help me I would say, “I am sorry, but could you move that over.” Gosh, it really gave me a new way to think about myself. I love myself. I am not saying I am perfect. Nobody is perfect. I really like the person I see in the mirror. I hope to convey that to other self-advocates. They can be great too. … It really did change my life. (Participant 6)
Although connections to a disability community facilitated this process, it was an internal process that required introspection and reflection. Some self-advocates credited their spirituality and faith as influencing this process. It was literally a transformation for many individuals. One leader brought a stuffed animal caterpillar to the interview. As she shared her story she pulled out the caterpillar, unzipped it, and then proceeded to turned it inside out into the form of a butterfly—a beautiful, symbolic representation of her metamorphosis. As she visually acted out this transformation, she explained:
My gift is to talk to people who have a disability and tell them to be a butterfly. Here is my butterfly. I was in a cocoon. I cannot get out. I wanted to get out, but I was in a cocoon. And this was before I ever talked to anybody. That is why I am in a cocoon. I wanted to tell everybody what I know, but I couldn't. I wanted to so bad! Now I can. Now I am a butterfly. This is what I did. This is me today. (Participant 11)
Within this personal transformation, a sense of pride often emerges (Gill, 1997). Some leaders affirmed cultural beliefs different from the majority culture, originating from the disability experience. As one leader described:
I don't think I would be the same person if I didn't have a disability. I think I am more compassionate. I think I understand how to support people. And that wouldn't have happened. My one brother has dyslexia, but that is the only other person in my family that has a disability. I just can't imagine my life because it would be totally different. I think about that sometimes. Yeah, my disability is frustrating. It gets in my way. But I really do believe that it is my disability that has given me all the opportunities that I have gotten. (Participant 3)
Compassion, sensitivity, and interdependency in the life stories of leaders seemed to be grounded in experiences of having limitations and needing supports as well as having experiences of disability oppression. As another leader explained:
I think there is a lot of prejudice in the world that you wouldn't know about until you have actually been through it. And learning about working with people in accepting all kinds of people has helped people grow. For me, I think you look at things differently from trying to help support somebody for who people are than some of society—for accepting people where they are at. It is a different way of looking than if you didn't have that prejudice against you. (Participant 1)
One leader with a visual impairment described his unique perspective on the world. He embraced other disability experiences and referred to a shared language:
I try to tell people that in the winter, summer, spring, and fall that there's different sounds. You could be in the same area, like around this building when there's no leaves on the trees, the sounds are different. You know, they bounce off the objects. You hear them different. You hear more things. You can hear cars at a farther distance, than if you have leaves on the trees, and you don't hear, you know, some of the sound is muffled or it bounces a different way. You know, it's hard to explain to people those kind of things. … Or, if somebody was in the wheelchair and they notice about the sidewalks. Well, this part of the sidewalk wasn't smooth, there was a lot of lumps, it was hard maneuvering your chair around on this sidewalk in this area. … You know, it's almost like a whole language. (Participant 7)
Finally, it is interesting that although leaders within the current study integrated difference into a positive self-concept, some expressed that their parents had not reached a similar stage. One leader shared the following:
Talking to my parents about my disability is really hard for them, because they blame themselves, even though I don't. I have told them numerous times, and they have seen it, it is my disability that has given me the opportunities that I have had. … So, I think it is very cool that I have learned how to deal with the fact of having a disability and that is just part of my life. I wish my parents would be able to do that, so that they didn't have to feel guilty. (Participant 3)
The disability identity formation of families is a topic worthy of future research. Questions also persist about multiple disability experiences and identities within the broader disability rights movement, which relate to a fourth major theme in the current study.
Interconnection With the Broader Disability Rights Movement
Self-advocates in the current study shared stories of working with the independent living movement and broader disability rights community, particularly on legislative issues, such as those concerning civil rights and access to home and community-based services. A broader sense of identity and shared experience as individuals with disabilities was clear across disability categories. For example, one leader prominently displayed a pin on her shirt that was made by a friend with physical disabilities; another wore a “Feel the Power of the Disability Vote” t-shirt—manifestations of a broader, collective disability experience. However, a theme of disconnection was also expressed that has important implications for the identity of leaders in the current study. Drawing comparisons between the self-advocacy and independent living movements, one self-advocate expressed:
Well, I think they are two different movements. I think their issue is more access, getting into things, they don't have the stigma that people with developmental disabilities have. They don't have, you know, the “retarded” word and that kind of stuff pounded on them, and told they are not worth anything. It takes a lot more for people with that kind of disability to speak out about it, and how it makes you feel. And even in the physical disability movement, people with physical disabilities don't want to be referred to as having “mental retardation.” That is why some people don't want to interact with people who have that label, because of the stigma towards people who have that kind of disability. You know, “You want to be seen as that?” (Participant 1)
There appeared to be a distinction made concerning stigma associated with labels of intellectual and developmental disabilities. In addition, some leaders expressed differences in the complexity and understanding of needed supports and accommodations, particularly for individuals with intellectual disability. Some people with hidden or nonvisible disabilities shared that they felt excluded from the disability community, a “hierarchy of disability” within the community (Charlton, 1998; Deal, 2003).
In the physical disability community, “mental retardation” is at the bottom of the pile. So why would you want to go down? I can understand that. I mean that is self survival. But, okay, so you don't want to go down, then bring us up! Not that anyone goes down, that we come up to be equals with them. … Until people with disabilities can accept people with disabilities, nothing is going to change. We cannot ask society to accept us if we cannot accept ourselves. I do think it is changing, but I think it is a long way from being there. (Participant 3)
There also appeared to be a distinction made within the expression of disability pride. Some leaders in the current study reacted negatively to displays of disability pride witnessed within the broader disability community. As one leader reflected:
I think it is really hard for people who have a label of developmental disabilities to say I am proud to be whatever their label is because of all the bad stuff that goes on with it. It is a lot easier to say I have a physical disability and say, “I'm proud”—an access thing compared to a mental disability. Because of all the things you get called, all the things that people relate to you as … society labels us something different. And the stuff you have gone through: put in institutions, kids not liking you, hit, called names, spit at, beat up because of the label, not a lot of friendships. I know that is a huge independent living center movement thing—“You should be proud of your disability!”—but they don't get all the stuff that goes on with it. … It is the label that is the disability, the label that people identify as. So I think people would have an issue saying, “I am a behavior and I am proud” or “I am mentally retarded and I am proud.” The stigma of that label is what people would have an issue with. (Participant 1)
Although some theorists of disability identity might view this discomfort surrounding the open display of “disability pride” indicative of internalized oppression or a lower level of disability identity formation, a fuller appreciation of the self-advocacy movement is informative. A foundational form of resistance within the self-advocacy movement has been to challenge the legitimacy of impairment categories and associated labels (Bogdan & Taylor, 1982; Rapley, 2004). In his work on the life histories of self-advocates, Goodley (2000) illustrated how self-advocacy challenges traditional thinking about the social model of disability (Oliver, 1996), particularly the separation of impairment and disability (Hughes & Paterson, 1997). For individuals in the current study, challenging the social construction of impairment, embodied in resistance to the label, is central to their lives and their movement.
Although in his classic work on stigma, Goffman (1963) provided no accessible pathways to positive identity development, rejecting impairment labels forms the very essence of the group identity self-advocates have formed and their pride. There appears to be a separate self-advocate identity, which leaders within the current study based their pride. In part, this identity formation challenges the institutionalized boundaries and legitimacy of labels. Similar to an analogy made by Shakespeare (2006), it allows individuals to declare a “badge” rather than a “label.” It is also logical, given the presence of a disability hierarchy within the disability community, to view the formation of a self-advocate identity as a positive form of resistance to marginalization within the disability community.
Bond With Social Justice and Interdependency
A final theme that emerged within the disability identity formation of leaders in the self-advocacy movement was a strong bond with struggles of other oppressed minority groups and interdependency. Leaders in the current study commonly drew parallels with the struggles for social justice by individuals from different racial and ethnic backgrounds, genders, sexual orientations, and belief systems. They saw themselves as allies to these movements and expressed a shared understanding about how others feel when discriminated against. Many leaders drew upon the history, teachings, and practices of the civil rights movement in the United States; they often credited leaders such as Martin Luther King, Jr., as role models in their own leadership development. There was also a strong identification with the gay and lesbian rights movement. For example, one leader shared a story from a self-advocacy meeting in which such a parallel was made:
When civil unions were being legalized in our state, there was a woman at one meeting. … They were discussing it in a meeting and it was a hot topic—gay lesbian rights, and there was a huge debate, and some people were timid about it. She stood up and said if you don't agree with gay lesbian rights equal rights in marriage you might as well call me the “R” word because it's the same thing. It just changed the whole thing. (Participant 13)
A vision for a society that embraces multiple differences and identities was expressed by one leader:
You know my favorite show is Star Trek. The reason why I like Star Trek is because look at all the differences that are on the Enterprise. They probably have like fifty different groups of people. Well, why can't we have that? So that is what my dream is: There won't be any disability. Everybody will be accepted for who they are and then we won't have to deal with all the other stuff. (Participant 3)
In line with higher stages of disability identity outlined by Weeber (2004), some leaders in the current study had a strong spiritual sense of oneness and connection with all of humanity. A strong value was placed on interdependency, accepting people for who they are and supporting others wherever they are. As one leader shared, it is about looking at each person and valuing their gifts:
I think one of the things that the self-advocacy movement does is to be accepted for who you are. It doesn't look into disability. It looks at the person. You are not called “consumer” and you are not called “client.” You are called by your name and you get at the level you are at. … I think that is a huge difference. And a lot of people will say, “Well, how many people with this kind of disability do you have in your organization?” Well, we don't know because we don't look at your disability. We look at the person. (Participant 1)
Again, this seemed to operate as a form of resistance to socially constructed labels, perhaps even transcending the boundaries of identity politics itself. Shakespeare (2006) has argued for new approaches towards a post-identity, post-social model disability politics. The identity formation of leaders in the self-advocacy movement may provide a window into such an approach. Identity was not confined to separate realms of impairment or disability but, rather, grounded in lived experience and resistance to oppressive forces and structures that devalue that experience. Indeed, within the life stories and identity of self-advocates, there is a challenge for a higher level of humanity and interdependency informed by the culture of the self-advocacy movement. In the wisdom of one leader:
I mean, if the world could pattern themselves after self-advocates, and governments like self-advocacy, we wouldn't have wars, we wouldn't have the stuff that we have. Because when someone is down on someone else, or when we see people in our movement start this, we stop it. We are not afraid to say, “Wait. Look at what you're doing to people. (Participant 7)
Few previous investigators have empirically explored the construct of disability identity (Weeber, 2004). The current study is one of a handful in which this was done and the most extensive study in which self-advocates were provided with space to share their stories. The perspectives of self-advocates are important for two key reasons. First, they come from the particular and unique disability experiences of self-advocates and their movement. They lead to a better understanding of the importance of the self-advocacy movement to the formation of a positive disability identity and the disability culture. Second, the perspectives of self-advocates represent marginal voices within the hierarchy of disability that exists within society and the disability community (Charlton, 1998; Deal, 2003). Therefore, they have the potential to inform and refine the larger construct of disability identity. Without undermining the concept of a broad-based disability identity, the formation of a particular form of disability identity, perhaps a “self-advocate identity,” might also be seen as a positive form of resistance to oppression.
Although some authors have questioned the application of disability identity to individuals with intellectual and developmental disabilities (Davies & Jenkins, 1997, Finlay & Lyons, 1998; Todd & Shearn, 1997), leaders in the current study shared stories of a dynamic and vital process of identity formation. The current study raises general themes related to this formation of disability identity. Although themes do not represent fixed stages, similar to findings of Weeber (2004), there does appear to be support for an interactive, dual-dimensional process. One dimension seems to consist of an internal, personal process that occurs within self-advocacy, whereas another dimension relates to the intersection with broader society. Although the dimensions inform each other, a deeper level of the second dimension tends to occur over the life course, particularly with greater exposure to the disability rights and other social movements.
The current study has a number of limitations. Although I sought a broad geographic representation, there were some regions of the country not represented due to budget and travel limitations. Also, I focused the selection criteria on established leaders who had held elected positions within the movement. Therefore, limited perspectives were included from young self-advocates and leaders who had not had supports to serve in elected positions, referred to by one advisor as “fallen leaders.” Leaders in the current study were among founding members of the movement at the local, state, and national levels, which occurred for many during their early adult years. Although great advances in school opportunities and expectations have occurred during their lifetime, many expressed concerns about the connections of youth to a disability community and their formation of a positive disability identity. Future researchers could explore disability identity of youth within a historical context as well as factors supporting leadership and disability identity formation. Additional research could also be conducted to explore multiple identities of self-advocates, the fluid and contextualized nature of disability identity, and disability identity of family members.
Findings in the current study, however, do provide valuable insights into disability identity formation and a conceptual framework upon which to build future research. They also highlight the importance of the self-advocacy movement in the lives of individuals with intellectual and developmental disabilities. Although the self-advocacy movement can provide pathways towards disability community and formation of a positive self-concept, it must be remembered that access to this pathway is currently shared by very few. Although the movement continues to grow, great variation exists among states, and in some states it has declined in recent years. Leaders at the national level have called for greater support and structural funding to strengthen the movement. Moreover, exciting intergenerational shifts and supports are occurring as youth with disabilities begin to assume leadership roles. We have so much additional knowledge to gain from listening to and supporting the movement.
This study was funded by the Mary E. Switzer Fellowship, U.S. Department of Education, National Institute on Disability and Rehabilitation Research, Grant H133F070013. The author also thanks the Association of University Centers on Disabilities, Self Advocates Becoming Empowered, and the participants for their support and assistance on the project.
Editor-in-Charge: Philip Ferguson